27 year-old Oklahoman Isaiah Hicks needs a lifesaving heart transplant. His doctors at Stanford University recently added Isaiah’s name to the United Network for Organ Sharing (UNOS) national computer system. Isaiah and his mom Benta are now in Palo Alto, CA waiting for a phone call that a donor heart is available. They have to be within 2 hours of the hospital at all times to be on the active list.
They had been temporarily staying with their life long family friend Dorrie. But they’re now living closer to Stanford University Medical Center. They need help with the everyday living expenses (rent, food, gas, etc.), and that’s why I’m asking for your help.
The good news is Isaiah has health insurance, carried through his father Don. But as a single mom who raised three wonderful sons (Caleb, Isaiah and Noah), while living paycheck to paycheck like so many of us, Benta hasn’t been able to prepare for the extraordinary expenses they will have at this time.
This family has already been on a very long journey to reach this point. Here are some of the significant medical events of Isaiah’s life:
• Born Summer 1990
• Diagnosed at 2 ½ months old with Congestive Heart Failure due to Transposition of the Greater Arteries (a heart defect), ventricular inversion, mitral regurgitation, and failure to thrive
• Began lifelong treatment with compound drug therapies, doctor’s appointments and hospitalizations
• Diagnosed at 14 with super ventricular tachycardia, multiple symptoms of heart failure, and severe migraine headaches
• February 2006, at age 15, his cardiologist said it was time for a heart transplant evaluation
• Benta shared this with family friend Dorrie, who lives in California, and she suggested they come to Stanford University for the evaluation and offered to contact them on Isaiah’s behalf.
• Stanford University contacted Benta within hours of Dorrie’s call
• In March 2006, Isaiah had his first appointment at Stanford. Benta said she learned more about Isaiah’s condition in that first 4 hour appointment, than she had in the previous 15 years
• In 2007, Isaiah had surgery at Stanford to implant a pacemaker/ICD (implantable cardioverter defibrillator). This device is designed to control abnormal heart rhythms and correct cardiac arrhythmias. During this 2 ½ month hospitalization Benta and Isaiah’s brothers Caleb and Noah were able to stay at the Ronald McDonald House
• At age 18, Isaiah transitioned from the children’s hospital to the adult program. With the help of his doctors at Stanford and his mom, he learned to make his own medical decisions and sign his own consents for procedures
• In 2010, Isaiah’s heart function continued to decrease. Since that time, he’s had regular appointments in Oklahoma, and made multiple trips to Stanford for checkups
• September 2014, Isaiah went in to cardiac arrest, due to chronic systolic heart failure. He was in a Tulsa, OK hospital for a week, then life flighted to Stanford when he was stabilized
• April 29, 2017, Benta found Isaiah collapsed and unconscious in his room. He was admitted to a Tulsa hospital for several days. Stanford recommend he be seen there ASAP
• May 2017, Isaiah was seen at Stanford where he was told that his heart function was continuing to decrease. They told him he needed close monitoring and more frequent visits. They also discussed Isaiah and his mom moving closer to Stanford.
• Upon returning home, Isaiah began feeling weaker, and tiring more easily. He returned to Stanford in September and completed all his pre-transplant testing. Benta was busy packing up their home, and preparing make the drive to the Stanford area with Isaiah’s adorable West Highland terrier, Chief (named after Isaiah’s favorite NFL team, the Kansas City Chiefs).
• Monday, November 6, 2017 upon his mom’s arrival to California, Isaiah was listed and is waiting for a donor heart.
My hope this is to ease some of the financial pressure of day to day living for them. The wait for a donor heart can be anywhere from a few days to a year. Then the surgery and recovery process will begin. If you’d like to know more about the transplant program, Stanford has as easy to read website at:
Even while he’s still in the hospital recovering, Isaiah and his mom will be learning how to care for his new heart, understand the anti-rejection medicine regimen he’ll start, and go through nutrition and exercise education. He’ll began the routine cardiac biopsies necessary to diagnose and monitor any signs of organ rejection. After discharge, Isaiah and his mom will be required to continue living close to Stanford for 3 months. During this time, Benta will be Isaiah’s full-time 24/7 caregiver. Then he’ll have monthly appointments until 6 months, and finally every 2 months for the first year. After that he’ll go back for an annual exam.
This is the best case scenario routine all the heart transplant patients at Stanford are asked to commit to. But Isaiah and Benta are also learning, by participating in group counseling with other pre- and post-transplant patients, that every individual transplant recipient faces their own individual risks of potential complications and organ rejection. But they’re also meeting other transplant recipients and hearing encouraging stories about how much better they feel after surgery.
I first met my dear friend Benta when Isaiah was 3 years old. I’ve watched in admiration as she raised her three sons. She’s taught me a lot about determination, perseverance, and commitment. I’ve watched her grow from a worried young mother with a very ill child to a strong woman who has taught her son that she will be by his side to help him accomplish any goal he sets for himself.
I’ve seen her go back to school to become a Certified Occupational Therapy Assistant to give her boys a better life and a stable home to grow up in, often working more than one job to make ends meet and provide for them. She decided long ago that Isaiah is living his life now, and she wanted to let him it to the fullest, despite his limitations. Benta decided to let Isaiah be a kid, and with the help of some amazing coaches who understood those limitations, Benta also let him play baseball with his friends (with the Braves and Angels teams) and basketball. He’s still a huge fan of the Oklahoma Thunder.
Isaiah is a wonderful young man, so full of love for his family. He has worked with special needs kids as a substitute paraprofessional, worked in a nursing home, and helped take care of his nieces Kyndall and Addyson. He attended Tulsa Community College (completing as many semesters as his health allowed) and also completed a computer course through Tulsa Technology Center. He’s always looking for ways to be a help to his family. Although he’s a humble, easygoing guy, he also has a hilarious sense of humor and makes everybody around him laugh. He has learned how to monitor his health and rest when he needs to. When he goes out with friends, he volunteers to be the “designated driver” because he understands that he has to take care of himself.
He told his mom he “just wants a chance to know what it feels like to feel good”.
Thank you for reading Isaiah’s story. This family has always been a team united, and I’m inviting you to be a part of Team Hicks. If you’d like to give, all donations, big or small, will help. Let’s give Isaiah that chance for a new heart and to know what it feels like to feel good. And please check back often for updates.
- Henry W.
- Robyn Peters
- Cheryl Estes
- Linda Tracy
Organizer and beneficiary
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